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CMS Prepares for Launch of Comparative Hospice Data

7th July 2017

The Centers for Medicare and Medicaid Services office, part of the U.S. Department of Health and Human Services, stands in Woodlawn, Maryland, U.S., on Dec. 28, 2010. Photographer: Jay Mallin/Bloomberg via Getty Images

Larry Beresford

Larry Beresford is a freelance medical journalist in Oakland, CA, with a specialization in hospice, palliative, and end-of-life care | @larryberesford

The US hospice movement was founded on a promise to deliver compassionate, professional, culturally sensitive interdisciplinary care and support to people struggling with terminal illnesses and to their families—at a time when the rest of the health care system was not terribly interested in the dilemmas of living well while dying.

The US hospice movement was founded on a promise to deliver compassionate, professional, culturally sensitive interdisciplinary care and support to people struggling with terminal illnesses and to their families—at a time when the rest of the health care system was not terribly interested in the dilemmas of living well while dying.

Despite—or because of—this model’s extraordinary growth since 1974, , America’s hospices continue to face high expectations for compassion, altruism and responsibility for the vulnerable patients they serve. A $16 billion Medicare sector that serves 1.7 million patients per year, Medicare agencies and contractors increasingly scrutinize hospices’ claims for hospice-appropriateness, while journalistic exposés in the Washington Post, Huffington Post, and elsewhere confirm that there is little tolerance when hospice programs fail to live up to their lofty mission.

But as hospice care has become less a humanitarian movement and more of a professional health service, it is also being held accountable to the standards other professional health services face, including measurable demonstrations of quality.

Sometime in July or August, the Centers for Medicare and Medicaid Services, which administers the Medicare program, will unveil a new government service and webpage called Hospice Compare, which will permit consumers and anyone else to look up a hospice’s quality scores and compare them to other hospices. Similar Compare websites have been launched for hospitals, nursing homes, home health agencies and other categories of health providers. But not a lot is known about how and how many consumers rely on this information to choose providers.

A Long and Complicated Path

It’s been a long and convoluted path, through multiple iterations, in order to agree upon hospice quality data that could be reported publicly—and the imminent rollout of Hospice Compare is just the beginning. Quality, to be comparable across sites, needs to be measured the same way with every patient. But some objective measures of health quality, such as mortality rates, don’t fit a provider type where the patients are expected to die within six months.

Researchers have spent years defining, testing, refining and winnowing sets of quality measures that might capture the quality of hospice care, sometimes described in terms of doing the right thing at the right time—every time. An early quality measure was the Family Evaluation of Hospice Care survey, developed by the National Hospice and Palliative Care Organization for use by hospices. But the requirements of quality data reporting eventually dictated the need for approved independent entities to send out the surveys to families and then tabulate the results.

Dying “well” remains a highly subjective concept. “As Dr. Ira Byock taught us, death is a personal event, not a medical event,” notes Lin Simon, Quality Outcomes Specialist for Delaware Hospice. “For each person, the event could be considered differently. How to grasp that across the board and compare it between hospices makes it difficult.”

For example, it is important to assess the patient’s pain at the time of admission and, if that pain is at a higher level than the patient wishes, to take steps to try to bring it under control. That is the basis for one of the quality measures on Hospice Compare, which tallies how often this happens across all of the hospice’s admissions. Other questions addressed in the initial version of Hospice Compare include: Was dyspnea (shortness of breath) assessed and addressed for the patient? Were personal beliefs and values addressed—if that is desired by the patient? Were personal treatment preferences honored?

Hospice agencies have a lot of concerns about how Hospice Compare measures are defined, and about the time lag, a year or more between actual provision of care and when the quality data get posted, says Lynn Stange, Chief Compliance and Consulting Integrity Officer for the hospice consulting firm Weatherbee Resources, Hyannis, Massachusetts. Providers also worry about whether the results will present them in a favorable light.

Will the measures truly discriminate between high quality hospice care and not so high quality? Will the high-quality hospices be able to use their quality scores in promoting their service to the community? For small hospices with fewer cases represented in their performance scores, a few bad ratings could impact their overall scores. Publicly reported poor quality scores could be an embarrassment to a hospice—but also an impetus to work on elevating its quality, Stange says. “Not just to change your scores but to propel actual quality improvement.”

What Else Goes into Hospice Quality?

On June 1, hospices were offered an opportunity to review the quality data that the government intends to report about them later this summer and, if they found inaccuracies, to request reconsideration. Quality measurement is a moving target, with more scores being added as fast as the government can work out their reliability and feasibility.

Coming in 2018 is the reporting of a satisfaction survey called the Hospice CAHPS (Consumer Assessment of Healthcare Providers and Systems), which is sent to survivors of deceased hospice patients several months after the death to rate the care their loved one received. Another measure in the works is to count the number of professional visits made by the hospice team to the patient’s home in the last three or seven days of the patient’s life—when care needs presumably are greater.

“This is a big deal for hospices as well as for consumers,” Simon says. “The measures will be increasingly refined, but I’d say give it some time before you look at the measures as the truth of how different hospices perform.” It also depends on what matters most to each individual from their hospice care, and how well they can learn to read the rating keys to help answer that question, she says. “I would want my own loved one’s hospice accountable for all of these measures.”

The measures aren’t perfect reflections of hospice quality, says Charlene Ross, partner of consulting firms Hospice Fundamentals and R&C Healthcare Solutions. “But it’s a start.” The initial measures focus on process—in other words, did the hospice team take the correct steps in providing care—rather than outcome, which is the actual impact of the care as experienced by the patient and family. But researchers will continue to pursue the Holy Grail of measurable outcomes from the subjective experience of receiving hospice care. In time, Hospice Compare will offer a Five Star rating of providers, which will help consumers make quicker choices.

“Eventually we’ll get to real quality reporting, given that a lot of smart people are continuing to work on this,” Ross says. “I recently moved to Hilton Head. I am trying to figure out how to find a doctor, a dentist, a hairdresser, so I go online to do it. If I needed to go to a hospital or nursing home, I’d probably use their Compare website. Eventually people will learn to do the same with hospices.”